Cancer patients rarely speak up about care problems

NEW YORK (Reuters Health) - In a new survey of cancer patients, many people who'd had problems with their treatment never said anything to the doctor they thought was responsible -- and almost none formally reported the problems to the hospital.

Patients cited delays in treatment, surgical complications and other issues related to medical care, in addition to communication barriers or breakdowns between them and their doctors, as the most common potentially harmful problems.

There could be many reasons why cancer patients don't always bring up concerns about those issues during treatment, according to the study's lead author.

"Sometimes there's a situation where they're really still thankful for the care that they got, and so they don't want to hurt anybody by saying, 'Everything was great, except...' Or they don't want to do harm to their relationship (with their doctor)," said Kathleen Mazor, from Meyers Primary Care Institute and the University of Massachusetts Medical School in Worcester.

Patients may also not want to dwell on some aspect of care that's in the past, she added.

"When people are undergoing something like cancer, they really feel they need to put all their energy on looking forward," Mazor said.

"They're thinking about getting better, moving forward, dealing with cancer and coming out the other end."

In interviews with about 400 breast and colon cancer patients, more than one in five said something "went wrong" during their cancer care that could have been prevented -- and caused or could have caused them physical or psychological harm.

Seventy-eight patients, almost all women who'd been treated for breast cancer, completed interviews with Mazor and her colleagues about those treatment-related problems.

About three-quarters of them cited communication problems with their doctor, such as not getting enough information or getting inaccurate information about their cancer. Specific examples include not being told about treatment options or being told their cancer would lead to death, only to have test results reveal it was treatable.

Half said something went wrong during their medical care itself, such as surgical problems requiring additional surgery, infections, or perceived delays in treatment or diagnosis.

Almost all cancer patients said that the problems with their doctor, whether communication-related or medical, had resulted in psychological harms, such as anger, fear and distress. The majority also cited physical harms like pain and the need for additional treatment.

Study participants also mentioned financial costs, life disruptions such as missed work and a negative impact on their family stemming from the perceived treatment problems.

Despite those consequences, just one-third of people the researchers interviewed said they'd discussed the harmful event with the doctor or nurse they believed was responsible.

Ten of them reported the problem to the hospital administration, Mazor's team wrote in the Journal of Clinical Oncology.

The message to patients is, "speak up," according to Mazor.

"Sometimes patients think that something has gone wrong and it hasn't. But if you never tell anybody... they never have a chance to say, 'This is how it always goes,' or, 'We couldn't prevent that,'" she said.

"If they can't say something to the person that they feel let them down or did something wrong, hopefully there's someone else like a nurse or their primary care physician or another physician that they can talk to and make their concerns known," she told Reuters Health.

Dr. Jeffrey Peppercorn, a breast cancer doctor from Duke University Medical Center in Durham, N.C., wrote in a commentary published with the study that addressing some of these problems may simply come down to doctors talking more with their patients and asking them to be open about concerns.

"We need to more generally improve communication with patients about their experience over the course of care," he wrote.

Mazor said hospitals can do their part by making it clear who people can go to if they feel something went wrong during their care, such as a patient advocate.